Background/objectives: One in six to seven hundred babies are born with cleft lip/palate annually in the UK. The psychological implications on children and immediate family can be severe, primarily due to stigma associated with this form of disfigurement. Previous studies suggest that certain Ethnic Groups with visible facial disfigurement experience higher levels of discrimination. However there is limited literature investigating the psychosocial issues faced by such patients when in the Ethnic Minority. The aim of this project was to explore parents’ perceptions within the UK and determine how services can be tailored to meet the individual needs of such patients.
Methods: (1) Parents of children of Ethnic Minority groups were interviewed in a questionnaire-based format using the Psychology Audit of the Craniofacial Society of Great Britain. (2) Experiences with care provided were explored through a novel “Further Needs Questionnaire”.
Outcome: A social/educational gathering for Asian Ethnic minority parents/children with cleft lip/palate was organised to informally meet some of the needs identified.
Results: First-generation parents of 24 children (10 Ethnic Minority, 14 Caucasian) were recruited. Results suggest that Ethnic Minority parents are less likely to report teasing/bullying compared to Caucasian parents (0% vs 29%), and similarly less likely to report their children when having any difficulties (20% vs 43%). However, 66% of Ethnic Minority parents report being anxious about their child’s future, compared to 42% of Caucasian parents. Ethnic Minority parents were significantly less willing to seek professional support (0% vs . 71%).
Conclusions: This study suggests that Ethnic Minority groups may react differently to cleft conditions compared to the Caucasian population. We intend to raise awareness of the access to service issues raised in this small study to stimulate research into an important area of psychological adjustment to having a cleft lip and/or palate.
Key words: cleft; Ethnic Minority; psychology